I was diagnosed with Gastroparesis in 2007 at the age of 17. My story, however, started long before I was diagnosed. One of my earliest memories is of being woken up by my parents in the middle of the night laying in puddle vomit. This happened very frequently as I grew up.
Throughout elementary and middle school I was in the nurse’s office daily with the worst stomach aches you can imagine. I was told repeatedly by the school nurse and my parents that it was just nerves. No one would listen to me, so I suffered. Most of the time I tried to hide the pain and sickness because I was tired of being told it was all in my head. As I grew older and started high school thing continued worsen with my health. I was in and out of the ER and urgent care on a weekly basis, vomiting daily and losing weight rapidly.
It wasn’t until I was 17 and could pay for my own healthcare that I was finally referred to a Gastroenterologist. After many tests and procedures, the doctor told me that I have Gastroparesis. At that time, I had no idea that those words would forever change my life. The doctor wrote me a prescription for a medication that I was told to take 30 mins before every meal. It was supposed to help my stomach motility; it didn’t. It did however cause me to have constant panic attacks and muscles spasms. When I returned to the gastroenterologist to follow up, he was frustrated and told me that if the medication I had tried didn’t help, there was nothing more he could do for me. I still didn’t realize what Gastroparesis was or how it would affect my future. I left not knowing that I needed to be treated for this.
Over the next 10 years I got married and had two children. When I got pregnant the first time I was 21 years old and weighed 97 pounds. I was vomiting daily before I got pregnant and the pregnancy only amplified the problem by 1000. I was actually losing weight instead of gaining any, for the first half of my pregnancy. My body was so small and frail that my son almost died during birth. The doctors performed an emergency c-section and were able to save his life. My second pregnancy was just as difficult and ended in another c-section.
I was a young mother to two children and I was still constantly in the hospital. My husband is in the military and deployed twice during this time. I had to move back home and in with his parents because I wasn’t able to care for my children alone. I still had no idea why this was all happening to me. I just knew my body was really sick. At this point my liver started to enlarge and get inflamed. I spent Christmas in the Intensive Care Unit with an enlarged heart, liver and fluid around multiple organs. In 2015 I moved back to my hometown of Albuquerque. My husband switched over to The National Guard and trained to be a paramedic so that he could better take care of me. After moving back, I set up my care with a whole team of specialty doctors at my local university hospital.
Finally, in December of 2017, after suffering my entire life, I was diagnosed yet again, with Gastroparesis. The difference was that this time I had a husband in the medical field and a team of doctors to explain to me exactly what that meant. My results came back saying that my Gastroparesis is severe and that my stomach is partially paralyzed. Paralyzed to the point that only a few months after my second diagnoses I was fitted with an NJ enteral feeding tube (A tube that goes up your nose and down through the GI Tract, bypassing the stomach and into the Jejunum). I have tried every medication that is on the market for Gastroparesis, to no avail. Currently there are very few treatment options. The medications all have terrible side effects and only work for a small number of people. I am diagnosed with Idiopathic Gastroparesis, which means they don’t know what caused it. In my case, my Gastroparesis is progressive and only getting worse.
I am now 28 and 100% dependent of my feeding tube. I have a consult in a month to have my feeding tube placed permanently. If my feeding tube ever fails me, my last option will be TPN (IV nutrition). Gastroparesis does not discriminate, it affects people of all races, ages, shapes and sizes. We recently had a 4-year-old in our
Gastroparesis community die from this horrible illness. We need help to find better treatment options and a cure. No one should be forced to starve to death.
Thank you for taking the time to read my story. I really hope it gives you a little insight into the Gastroparesis world and the struggles we face.